Think Before You Speak (please)

I have two children with chronic medical conditions.  Their medical conditions affect them most days and it is at the forefront of our daily lives. Some days are more manageable than other days 

After our traumatic summer with Gabriel, we are now facing the same brain surgery for our little 8 year old son.  The ongoing stress and his issues from his medical conditions is a driving force in our lives.  

His behavior and focus are declining. His pain is evident.  He doesn't sleep well and cries often. He screams.  He has become a bigger challenge for his teacher   It is awful to watch and even worse to feel helpless as his parent. 

We continue to take him to specialists.  He tells his story to the specialists and almost begs the doctors to help him. He's 8.  Just 8 years old and suffers from chronic pain already.  We spend a lot of time figuring out medication and insurance coverage while finding the best doctors in our area. 

 I know that I have a few friends who can relate to this ongoing battle and trauma. I've been surprised by the kinds of comments I've heard from people and I'm unsure if they are well meaning or not.  The comments come across as insensitive yet I have to remember that at least these people are reaching out to me because some people don't reach out at all and that hurts   

One comment I heard was, "at least you know what to expect this time."  The positive side of this statement is yes, now I know what the surgery entails and what can go wrong. I also know the fear and anxiety. I also know that things can and do go wrong after surgery.  These complications can lead to fatality. It's a reality for us now, not a faraway possibility   I lived it and I don't want to jump back into the fire again. 

"You can plan better this time".  This was said by someone who didn't help us at all this past summer and that's fine.  However, this statement made me realize that she held what seemed like a lack of preparation against me.  I had less than two weeks to prepare for BRAIN surgery on my nine year old. A surgeon removed part of my son's skull and manipulated his brain. I was numb. I was paralyzed with fear.  Despite that, I think I organized and prepared well.   I think that I had amazing friends and relatives step forward to help us when four days in the hospital turned to five weeks.  No amount of preparation is ever enough for an unexpected five week stay at the hospital with a child that is full of unknowns and crisis 

"My child was in the NICU so I understand what you went through. " Lane was also in the NICU for 29 days (crazy, two of our children were in the hospital for a month). While the fear and anxiety of the two experiences are the same, nothing else is similar.  Newborns don't remember details.  Newborns can't talk about their experience.   They don't beg you to take them home.  Newborns can be left at the hospital overnight, even if it feels like you've left your right arm behind. Most newborns don't scream bloody murder when you take them back to the hospital because they don't remember their experience in its entirety.  My son with autism couldn't be left alone.  We couldn't leave his side.  It takes an enormous toll on a family. 

I know that the majority of people can not relate to our adventures and I am glad. I'm thankful this is not the norm.  I wouldn't wish these fears on anyone.   Please take a moment to think through comments said to a family who deals with chronic medical conditions.  Sometimes a well thought out comment can go a long way in supporting a family who is hanging by a thread daily.